ArticleJournal of intellectual disability research : JIDR2025
'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.
Article in Journal of intellectual disability research : JIDR, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Ageing in Adults With Mild and Moderate Intellectual Disabilities in Brazil: A Biopsychosocial Comparison of Individuals With and Without Down Syndrome.Journal of intellectual disability research : JIDR · 2026Observational
- Factors Influencing the Implementation of Transitional Care for Adolescents With Profound Intellectual and Multiple Disabilities: Experiences of Dutch Healthcare Professionals.Journal of intellectual disability research : JIDR · 2026Article
- Promoting brain health across the lifespan: Socioeconomic burden, global recommendations, and the Spanish national plan.Neuroscience applied · 2026Article
- Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline.Journal of intellectual disability research : JIDR · 2026Article
- 'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.Journal of intellectual disability research : JIDR · 2025Article
- Adolescent to adult health care transition for persons with intellectual and developmental disability: current barriers, next steps.Frontiers in pediatrics · 2025Article
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Authors and funding
8 authors.
Funding
Abstract
backgroundFor young people with rare conditions associated with intellectual disability, the transfer from paediatric to adult healthcare providers is often complicated. European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to develop a clinical practice guideline to improve this transition. The aim of this study was to identify which aspects of the transition to adult care matter most and to describe the current care gap as experienced by European caregivers to inform the guideline scope.
methodsAn international web-based survey was conducted by ERN-ITHACA in January-February 2023. Priorities for a good transition process and current care gaps in Europe were identified using the 'Mind the Gap' scale. The surveys were created in plain and easy-to-read language and available in nine European languages.
resultsOne hundred fifty-seven caregivers from 15 European countries completed the survey, representing over 40 conditions, including the Phelan-McDermid, Rubinstein-Taybi, 22q11.2 deletion and Kleefstra syndromes. Care gaps were identified, particularly related to process issues such as the preparation for and adaptation to adult healthcare, supporting independence and planning for the future. Items considered essential for optimal healthcare were related to individualised approaches, information provision and coordination of care. DISCUSSION: Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.
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